I can’t believe it’s taken me this long to sit down and write this blog! The good news is that I’ve been busy playing with my kiddos all day, every day, so I haven’t had much free time. It’s been a pretty great summer thus far. I’m so excited to tell you all about the Dysautonomia Conference that I attended in Washington DC in July! What an amazing, life changing, life affirming, scary, powerful adventure it was…
It’s no secret that people with chronic illness aren’t always the easiest people to travel with. We have symptoms that we have to manage, loads of medication to account for, and in the back of our minds (well, at least mine…) is the all consuming thoughts of the “what if’s…” What if I flare up? What if I need to go to the ER? Where is the nearest ER? What if they’ve never heard of POTS? What if I lose my medication? What if something happens on the plane? What if it’s too hot? What if it’s too cold? What if I have a migraine? The list goes on and on and on. I did my best to prepare for any event. I had extra meds, extra clothes, my binder full of my medical history and diagnoses, I had water, snacks, and things to read to keep my mind off the fact that I was about to hop on a plane for the first time since my ill-fated trip to Kansas City in 2014. I tried to hide my anxiety, but I was pretty much scared out of my mind. I had things under control…at home. I could manage this illness…at home. I knew what to do if I flared up…at home. Traveling was a new frontier, and I wasn’t sure I could do it. The good news is…I did it! The flights were easy and very seamless. My mom and I made it there on time, no luggage lost and no one had to sedate me on the plane…I call that a success!
I call the trip to Kansas City an “ill fated trip”…but as you all know, this trip saved my life, and I LOVE that amazing hospital! (see previous posts!)
We also got very lucky with the weather. It was hot, but it was manageable. We rented a car and drove into DC. We had some time to play tourist before the conference started. I am happy to report that I was able to walk around the entire time. I pushed the water, salt, and my meds, but I made it! My mom was the one who actually requested we sit down and take a break! That never happens! It’s ALWAYS me who needs a break! Granted, she had a blister on her foot from her boat shoes…but I don’t care! It still wasn’t my fault we took a break! Woo hoo! Potsie success! 🙂
The conference started with a meet and greet session. They wanted people to wonder around and meet each other. Now, this is great in theory…but this is where I had a mini break down. As I walked off the elevator, I really expected to see people who looked like me…people carrying around water, salty snacks, and maybe wearing compression socks (such a cute look in 100 degree heat!) What I did not expect to see were people in wheelchairs…people with service dogs…people with ports in their chest…people who couldn’t stand at all…maybe I was naive, or just plain in denial, but this sight knocked me off my feet. My eyes welled with tears and I told my mom “I can’t do this!” I was scared. I was sad. I was intimidated. I was lost. My mom swooped me into the breakfast room and made sure I ate (always a good idea!) and took my meds. She told me that we could take it slow and that I could do it. I franticly texted my cousin, who just happens to be one of my biggest cheerleaders (love you, Ames!) and she said the same thing “you can do it! what blessing that you are at the level you are at!” Between the two of them supporting me, I braced myself and we went into the conference…and never looked back! 🙂
Being in a room full of doctors, patients, and caregivers was absolutely the most amazing experience I’ve had on this journey with POTS/Dysautonomia. These people just get it. They all understood what I meant when I said “I have brain fog so badly right now!” No one cared if you needed to excuse yourself to get some MORE water. It was totally fine if you needed to lay on the floor and put your feet up to stop the blood pooling. Everyone just accepted everyone for where they were, and who they were. It was like we were all a part of this crazy f*cked up club (that NO ONE wants to belong to…but we do!). The break out sessions were AMAZING. The doctors that spoke were so knowledgeable, and so funny. There wasn’t a session that didn’t include humor. They were honest, and hopeful. It was clear that there is no cure for this illness. There is no magic pill, and I knew that, but now I know for sure. There are ways to manage symptoms, but POTS is POTS is POTS, and it’s here to stay. I did learn that I am one of the lucky ones…as I mentioned above there are people who are completely debilitated by this syndrome. Some people can’t get up on their own two feet let alone work and play with their babies. I thank my lucky stars for being in the place that I am in. Even on my bad days…I am so blessed! *Thank you Amy for pointing that out to me*
I was able to participate in a major POTS study through the Mayo clinic while I was there. They are working on trying to find an autoimmune connection, and I cannot wait to see the results!! They also released a POTS survey to help gather more information about POTS…if you are POTSIE reading this…PLEASE take some time to fill this out! We need to make sure the medical community knows whats REALLY going on with us! The link is here: http://www.dysautonomiainternational.org/page.php?ID=48
Now, I don’t want to speak for my mom, but she looked so happy to be talking to other people who had a potsie in their family. There were other moms, other family members, and other professionals she was able to make connections with. This is one of the most amazing parts of this conference. You really feel like you’re not alone! I cannot imagine how she must feel watching her daughter go through this, as a mom it’s pretty unimaginable! But, I’m so happy she came with me and gave me the push to keep going. I can safely say this changed both of our lives forever.
I won’t bore you all with the specific medical information I gathered…but the bottom line is that I have an amazing doctor (who was AT the conference too!!!!!!) and I have a good treatment plan in place. It was pretty clear that exercise was a “must have” so since I’ve been home I’ve been back on the work out wagon! I bike 5 miles a day, I do weight training, and core work. Do I love it? NO. But, I’m pushing ahead! I want to have the strongest, healthiest body I can have…I need that to keep kicking POTS in the butt!
me, my mom, and Dr. Gracin! we’re quite a POTS kicking trio!
To wrap up…it was amazing. Simply amazing. I cannot wait to go back next year and meet more patients, doctors, vendors and families. It’s so nice to be part of this community…even though I wouldn’t wish this community on my worst enemy, the POTSIE sorority really isn’t too bad…we’re a fun-lovin’, hard-workin’, butt-kickin’ bunch! ❤